My NMO Misdiagnosis Journey
Last updated: March 2023
I'm sure I'm not the only one that can attest to having difficulty getting diagnosed with NMO for the first time, around when symptoms began manifesting. In our NMO misdiagnosis journey, some of us really have a story to tell.
The beginning of my NMO misdiagnosis journey
A lot of us were previously diagnosed with multiple sclerosis (MS) and lived with this diagnosis for many years before being correctly diagnosed. With NMO being so rare, it's easy to see how this could happen.
I've been experiencing migraine headaches for as long as I can remember, even as a child. For this reason, in January 2013, I was not surprised when I started experiencing persistent headaches. They were so severe and turned into migraines reasonably quickly. However, things took a turn for the worst.
New NMO symptoms: nerve pain
I started experiencing nerve pain on the side of my body. This was something new that I had never experienced before.
The nerve pain was so bad on one occasion that I almost blacked out while driving. At that point, I decided it was time for me to go to the ER. There, I was diagnosed with shingles and given medication for my nerves.
The NMO symptoms progressed
After I was diagnosed with shingles, I knew it was not the correct diagnosis. It didn't make any sense, but at the time, I had no way of disproving this theory, especially in a military hospital.
I just took the medication and hoped it would go away.
After about two weeks, I finally got some relief and continued to move on with my life. I put it past me and didn't think anything of it. That is until a month later.
Nausea that stopped me in my tracks
I went to work, and I was so nauseous. It was so bad that I could not make it through the day and had to go home.
I barely made it inside the house before I started throwing up. It was constant and aggressive. I remember thinking to myself, "I never experienced a stomach bug like this before."
I stuck it out at home until five days had passed, and it wasn't getting any better. I also started experiencing severe vertigo.
One of countless ER experiences
I can't tell you how many times I went back and forth to the ER, looking for a reason for what was happening to me. Each time I was met with extreme disappointment and was sent home with no answers.
The passage of time meant my NMO progressed
The worst part? As more time passed, I got worse and worse. Every ER experience was the same. X-ray, CT scan, EKG, blood work, fluids, and "go home." Hours and hours of the same thing.
I was getting worse, and it felt like no one cared
At no point was I ever admitted for any level of observation. After a while, I started showing apparent signs of neurological issues. No MRI was ever performed while at any hospital. I went through this for a month.
Within that month, I lost 20 pounds and my ability to see correctly. Not to mention, I had nystagmus, making it extremely difficult for my vision and my body due to nausea.
Has NMO impacted your ability to keep a job?